Intersex folx are literally invisibilized when in infanthood, their bodies are widely altered through invasive surgeries for cosmetic reasons. This cultural and medical interphobia results in the community being unable to access healthcare. The Delhi High Court recently gave the government 8 weeks to submit a response to the recommendation of Delhi Commission for Protection of Child Rights (DCPCR) to ban such procedures except in the case of threat to life.
I spoke to Duha (she/they), a microbiology student in Bangalore. They have extensively worked in the grassroots organisations that work with Intersex people and their visibility. In the interview, they speak at length about their lived experience of attempting to access healthcare as an intersex individual. This sheds light on the necessity to deeply reform how medical practitioners interact with and address members of the non-cis-heteronormative community.
Q. How often do you go for any medical consultation? What usually impacts your decision to approach a medical professional or self-medicate?
I visit hospitals at least twice a month and it’s mostly to prevent further [health]scare or [the exacerbation of the] pain that I have been experiencing for a while. Often, when I wish I didn’t have to access a doctor’s services, it is because of the judgmental questions and looks that I have to face while accessing healthcare as an intersex person.
I do not self diagnose myself at many points because it has its own consequences down the line and because it has always been dismissed as incorrect by the medical community. From the receptionist to the pharmacist, I have faced prejudices and it has greatly impacted my attitude towards hospitals and doctors.
Q. Could you share an example of any moment when your access to healthcare has been delayed?
In 2020, I fell sick with a very rare autoimmune disease and I was in a lot of pain and kept screaming for help while waiting for the doctor, outside his cabin. I was asked to keep shut or warned that I would be asked to leave the hospital (without receiving the care I needed): Mind you I was in a wheelchair and throwing up constantly and couldn’t walk. My treatment was delayed because the nurse thought that my symptoms were not severe and that I could be made to wait a while with suppressants. After 5 hours of waiting, I was attended to because I had fainted and it was gathering negative press for the hospital.
Q. Are you aware of any government schemes/plans/ additional help that you are eligible for?
As much as I would like to approach Government schemes, I would rather not. I have my family working in government setups and I see the resources they are provided with. However, I do know that when I say that I don’t want access to the kind of healthcare that they provide government setups it comes from a privileged space.
(Writer’s note: The exclusion of gender and sexual minorities from healthcare set-ups in India greatly impacts those with less financial privilege or familial support to a great extent in terms of their physical, mental, and sexual health. This degree of lack of access to healthcare worsens for people whose intersectional identities, such as caste or mental illness, are further socially and institutionally discriminated against.)
Q. What are some ways in which healthcare providers could ensure your comfort and privacy while seeking treatment/consultation?
I think that, first and foremost, the medical fraternity needs to understand that it’s 2022 and queer people exist, people with disabilities exist, fat people exist, and people of other diversities exist – and they exist for themselves and not for the medical fraternity to treat them like textbook subjects.
I wish that doctors are not burdened but rather given awareness that fat people and their issues are not always dependent on them being fat or eating a certain diet. Shaming of any kind needs to go away. We approach doctors or health care-givers to be free of bias and judgments, but instead we get a lot of [judgment] along with our [heavy] medical bills.
By now we also know that just education is not enough. We also need accountability and repercussions if they don’t oblige to give proper healthcare services.
Q. What do you wish you could tell your younger self to affirm their experiences?
I wish I could remind and tell myself that loneliness or exclusion isn’t always bad. Sometimes it’s a window of opportunity to let us build spaces together- and that you will continuously learn and grow as you move ahead in life.